During a visit a few years ago to Anchorage, Alaska to attend a LFA conference about lupus, I had an opportunity to visit with Robin Brey, M.D., a neurologist who worked at the University of Texas Health Science Center in San Antonio and was president of the LFA, South Central Texas Chapter and chat with her about nervous system involvement of lupus. Doctor Brey was quoted in a 2005 Lupus Now issue , explaining that “cognitive dysfunction definitely is the most common symptom of CNS involvement that she sees.”“The way I relate to the term ‘cognitive dysfunction’ is that it’s a problem of difficulty finding words and retrieving information,” Brey explains. “My patients say it feels like they have brain fog.”
CNS lupus involvement
In addition to the milder brain fog, some lupus patients also have Central Nervous System (CNS) involvement of their lupus. This is a more serious problem than brain fog, and if uncontrolled can result in damage to brain tissue and even in extreme cases death. This, like any other attack organ damaging attack of lupus is important to treat quickly and appropriately to prevent possible damage to brain tissue or other disabling complications.
My own lupus challenges include CNS involvement. CNS lupus is the major reason that my lupus medications eventually included stronger drugs such as prednisone, kenalog injections, methotrexate, azathiaprine, rituximab infusions and now belimumab infusions. Each patient with this problem is carefully followed by their rheumatologist, and may also be treated for their CNS symptoms through referral to a neurologist. The most severe cases of CNS involvement can also cause seizures, but I have never had this problem myself.
My CNS lupus symptoms usually indicating a flare include:
Most of my CNS lupus symptoms typically respond immediately to steroid treatment given by my doctor as an injection or a large burst in my daily prednisone dose, followed by a gradual tapering of the dose as the flare lets up.
Authoritative information about CNS lupus and other types of nervous system involvement of Lupus can be found at the Lupus Foundation of America’s website. Their article on the Nervous System discusses various types of nervous system involvement, and highlights many important issues and symptoms associated with these possible complications of lupus.
Peripheral and autonomic nervous system and lupus
Peripheral neuropathy with lupus can be caused by inflammation, compression, damage or swelling in tissue around nerves, resulting in vision problems, facial pain, ringing ears, dizziness, drooping eyelids, or carpel tunnel syndrome. My lupus experiences include peripheral neuropathies in my legs, cranial nerves and even once caused severe pain in a tooth that almost made me get an unnecessary root canal. Neuropathy can cause burning, pain, numbness and temporary disruption of normal nerve functions.
Neuropathy nerve damage
Lupus can cause over activity in autonomic nervous system (ANS) and disrupt normal regulation of automatic body functions and cause numbness, burning, tingling, mental confusion, headaches, and digestive problems.
Raynaud’s phenomenon happens when ANS lupus involvement causes inflammation nerves or blood vessel, making vessels spasm and restrict blood flow, especially in repose to cold. Finger tips or toes turn red, white, or blue and may also hurt.
Headaches in lupus patients can be due to migraines, or can be caused by vasculitis from active lupus causing blood vessel inflammation. Lupus headaches that don’t respond to over-the-counter pain medications should be discussed with the patient’s doctor.